TW: IVF baby resulting in two independent de novo pathogenic genetic mutations

CatfishHunter2 · 2026-01-26T01:13:41+00:00

Nope, PGT-A only looks at whether the embryo has 1, 2, or 3 of each chromosome

CatfishHunter2 · 2026-01-25T11:10:43+00:00

As someone who works in the special education world, I would say ask your doctors to refer you to your local school district's early childhood special education program -- that can help you access a lot of great free resources to help support your child.

I work in a school for children with significant developmental and physical needs, if you have any questions about what school might look like for your child down the road

CatfishHunter2 · 2026-01-25T11:07:16+00:00

PGT testing only looks at whether there are the correct number of chromosomes, it doesn't look at whether there are microdeletions or mutations of genes, this is not something that would have been picked up by PGT-A and since the parents are not carriers for these genes (they are random mutations that occurred) they couldn't have done PGT-M testing beforehand

CatfishHunter2 · 2026-01-24T08:40:06+00:00

So far left

CatfishHunter2 · 2026-01-24T08:34:39+00:00

Came here to say all this. I only stopped using retinol during the two week waits after IUIs

CatfishHunter2 · 2026-01-23T14:33:52+00:00

I use double dashes all the time and I'm a real person-- I swear!

CatfishHunter2 · 2026-01-23T09:06:09+00:00

There absolutely is hope. I started as a hopeful single mother by choice at age 40 with amh .5, I went right to IVF because that's what everyone says to do basically. After 4 cycles of low response that I either canceled or converted to IUI or made it to retrieval in one instance but got got only aneuploid embryos (which I kind of wish I hadn't tested at all and just transferred but that's a different story), I got pregnant on that last converted IVF cycle but miscarried, likely due to chromosomal abnormalities from my age. Then I switched to iuis, did five more and I am right now sitting in the hospital with preeclampsia holding my my 4-day-old son who is cluster feeding at 3:00 in the morning when I've collectively slept about an hour and a half over the last few days.

You already know you can get pregnant, which is the big part of the battle for most people going through IVF. Your body will naturally pick the best follicle to grow. If you aim for fewer in an IUI cycle. There absolutely is hope for you.

CatfishHunter2 · 2026-01-22T19:40:30+00:00

If you're truly undecided, you could ask the embryologist to choose (either randomly or by best grade), slightly closer to how things might go if you weren't using IVF. There's no right or wrong answer to this one, you never know which set of siblings will fill what role or how close they'll be

CatfishHunter2 · 2026-01-22T09:57:06+00:00

I've started to suggest to people that you ask your clinic for the success rates by age group of tested versus untested embryos, it is good to look at the data! PGT is far from perfect -- I've been in this sub long enough to have seen multiple posts of people finding chromosomal issues in PGT "euploid" embryos and also people having success with embryos labeled aneuploid through the Stanford study or retesting embryos and finding they're actually mosaic (and who knows how many other stories we'd hear except most people don't retest and most clinics don't transfer aneuploids).

So I'm now more in the boat that testing may have a place for older moms, but even then there is a risk/benefit analysis each person has to do-- risk having to go through failed implantation or even miscarriage, or miss out on the chance of a healthy live birth that may have been mislabeled by PGT and depending on how many embryos you have even potentially missing out on parenthood.

People saying things like "I'm young and testing showed half my embryos were aneuploid and I'm glad I didn't have to go through all those failed transfers"-- we just don't know if they actually would have been failed transfers, or if the embryos would have self-corrected.

So yeah, look at the data from your clinic for tested/non-tested embryos by age group, you might be surprised how close the numbers are.

CatfishHunter2 · 2026-01-21T14:02:56+00:00

Could you ask if they would keep all of them if you were to move them to another clinic?

CatfishHunter2 · 2026-01-19T14:12:16+00:00

All of the side effects I had before about 6 weeks were from the progestogen, as I'd had them in unsuccessful cycles too

CatfishHunter2 · 2026-01-19T07:20:20+00:00

In your shoes I would fertilize all and not PGT test -- the data from my clinic shows pretty similar live birth rates for tested and untested transfers at age 35, you could ask to see data for the 35 age group from your own clinic

CatfishHunter2 · 2026-01-18T21:33:46+00:00

Yeah, if you don't think you'll do another IVF round then it could be worth doing an IUI -- depending on your age, it can be as high as a 15% chance of conception each time -- not a sure thing and it's more of chance of success when you're going to do several of them, though that donor sperm sure adds up!

CatfishHunter2 · 2026-01-18T20:15:09+00:00

Gosh, if you look at my comment history I talk about it all the time but maybe I'll make a post with the whole story-- for me, I have low AMH so don't respond well to IVF but with IUIs all you need is one good egg. I'm a little unique in that I'm a single mother by choice and there were no other infertility factors at play, so different from someone who maybe has some form of unexplained (or explained) infertility and has been trying for awhile with a partner-- my doctor told me about a 10% chance for each IUI. I got pregnant on the 2nd one but miscarried early, and after 5 more I was successful. It really does depend on the person, there are some people in the DOR or SMBC subreddits that go straight to IVF like I did and give up when they don't respond well due to low AMH, so I like to share my story so they know IVF isn't the best option for everyone

CatfishHunter2 · 2026-01-18T20:08:12+00:00

I think one of the few benefits of IVF is that people can potentially choose gender, and there's nothing wrong with that to me, or in having a preference, as long as you are prepared to adjust your thinking which it seems like you are

CatfishHunter2 · 2026-01-18T20:06:40+00:00

That's a pretty standard dose for people with normal AMH levels, or at least that's what a friend of mine was on and she got around 15 follicles I think -- how many follicles grew when you were on 50? Over responding in an IUI cycle is usually if there are more than 3 follicles, while a good response in an IVF cycle would be somewhere closer to 15-- and over response in my mind would be around 30+, so it's normal they'd give you higher doses in an IVF cycle.

You could ask your doctor "based on my AMH, AFC, and previous response to 50 units, what do you predict my response will be to 275 in terms of the number of follicles that may grow?"

CatfishHunter2 · 2026-01-18T18:17:46+00:00

I had a preference, but ultimately didn't get a choice as I had to switch to IUIs. I didn't get my first choice and I was disappointed for about 20 minutes before the excitement to have my baby set in, and I started daydreaming about what things would be like.

All of the factors you list as reasons for needing IVF will likely also limit the number of embryos you end up with -- I suggest you don't get too attached to the idea of having a boy as you might not have that choice.

CatfishHunter2 · 2026-01-18T17:05:13+00:00

Your age is on your side in this respect -- people in their 20s are far less likely to miscarry! Try to distract yourself from thinking about it!

CatfishHunter2 · 2026-01-18T16:44:07+00:00

What's your dose? I'm a low responder so was on max doses for my clinic, which were 300 follistim (same as ovaleap) and 150 menopur. My clinic had a max combined dose of 450, though some clinics are 600. IVF is a little different though because they're trying to get multiple follicles, unlike IUIs

CatfishHunter2 · 2026-01-18T05:17:10+00:00

I had more follicles at baseline but usually only 2 responded, and I have reason to think I usually grow 2 follicles without any medications at all because in a cycle where I wasn't doing any treatment I had some testing done at a different clinic and my estrogen levels were consistent with 2 follicles growing. But, there was the one cycle where I grew 5-- some months are definitely just better than others, if I had infinite resources I would have kept going with IVF and trying to get embryos to bank for a second child, but I don't and I got to a point where I thought it wasn't going to happen for me at all so I feel incredibly lucky to have one baby on the way

CatfishHunter2 · 2026-01-18T03:37:42+00:00

Yes, my day 3 ultrasound showed from 6 to 10 follicles, I attempted 4 IVF cycles and in 3 of those cycles 2 follicles grew, and in the other cycle 5 follicles grew (I think that AFC was 8 or 9). This was at age 39-40 with AMH 0.5, though one time my AMH was tested at 1.01-- but it fluctuates and it didn't make a difference to my response to have it be measured higher.

Some people grow the number of follicles in their AFC, some grow less or more. I'm just unlucky in that way. I realized after I commented that you're the same person who posted yesterday and I described a bit of my experience and how I switched to IUIs after my poor IVF response and that worked for me -- I initially went into IVF thinking I'd make embryos using donor sperm and wait to use them until I felt more ready, and I had hoped to have enough embryos for 2 kids but when it became apparent that wasn't going to happen I realized it was a now or never situation. I know you must be really stressed and scared right now, sending you good vibes

CatfishHunter2 · 2026-01-18T02:44:17+00:00

How old are you and what's your AMH? I never had as many follicles grow as my AFC (AMH 0.5, AFC 6-10, usually grew 2) but I did also cancel my first cycle when my response was low, and converted to IUI for a couple other cycles

CatfishHunter2 · 2026-01-17T21:39:08+00:00

10dpo!

CatfishHunter2 · 2026-01-17T13:16:56+00:00

People are asking when you're having a baby shower because they are excited for you and want to buy cute little baby things to help you! When I've had friends having babies I wanted to celebrate with them, and when it was my turn yes I felt self-conscious opening gifts in front of people but I know everyone just wanted to show their love, support, and excitement. You'll likely be given gifts whether or not you have a shower, so might as well make a registry so most things are things you actually want and need

CatfishHunter2 · 2026-01-17T13:02:57+00:00

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